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by Stella De Genova

We’re almost through this grueling Chicago winter and on this unusually warm day in mid-February (which actually means we’ve reached 32oF), I am taking the elevated train downtown.

The sun is so bright, it’s glaring. The first thing I notice is a splash of bright colors on the woman’s head scarf sitting in front of me. The sunlight is directly on her scarf and it stands out so intensely. I look around and that’s the last of the color that I see. Everyone’s coats are black or gray. Are these the only color coats people buy anymore? Probably not. What it really means is that when the sunlight hits my eyes, it throws my vision into either a white-out or turns everything into silhouettes. In fact, all of the figures around me are now black or gray. This can be disconcerting at first, but I’m not afraid. I can close my eyes and my brain starts to see with my other senses.

As I sit in this chilly metal box called a train car, I notice the warmth coming out of the vent under the window. And I feel the swish of cold air swirl around my head and ankles every time the doors open. There is a sway to our ride as we move forward and I can hear the scraping of wheels on the iron rails laid across wooden beams.

There are lots of smells to be found on a train ride and thankfully, none are too unpleasant this morning. There is soap, laundry detergent, oily hair and some kind of flavored coffee.

It’s early and everyone is still sleepy. This is fine with me because on this morning train, no one is excited, agitated or tense. Sometimes, I imagine I see the auras of everyone’s energy around me and today, the auras are soft and quiet colors. I can hear some quiet, muffled voices There’s usually at least one rider who has headphones that entertain us all. I’ve heard every genre of music on train rides through the years but today, just a muffled synthesized beat to go along with some anonymous rap song.

I feel the train move and stop. Doors open. Doors close. Move again, stop again. People shuffling past. Some sit and some stand. I can feel their presence. As we get closer to my stop, the crowd thins. We are now in between tall buildings and the sun is blocked. Now, only fluorescent train car lights shine on us. Are they tinted blue or yellow – or is that purple? No matter, it’s not as important to me as it used to be.

“Next stop: State & Lake” blares the taped announcement through the overhead speakers. Stop daydreaming, it’s time to go.

by Stella De Genova

Sitting at my home computer in the Midwestern, American city that I was born and raised in, it feels a little surreal this morning to think about where I was for the last 12 days. Nonetheless, the reality of it all is that I just got back from visiting family and touring London, England and to top it off, a 2-day jump over to Paris, France. As a legally blind person, white cane in hand, along with my son who was my traveling companion and my brother who has lived in England for a few years, I’m just as amazed at the blurry, beautiful sights I saw as I am at how many “tubes” and trains and buses we maneuvered to get around. A savvy traveler I am not and I would not suggest doing this alone to any other blind person but I feel some accomplishment about having been able to run through the streets and train stations of London and Paris.

We literally walked 10’s of thousands of steps and took in medieval castles and homes, art museums and cathedrals and must-see spots like the Tower Bridge, Big Ben and Westminster Abbey in London and its midlands; and the Eiffel Tower, Arc d’Triumph, Musee d’Orsay and Mont Martre in Paris. We gazed upon the masterpieces of Michelangelo, Holbein, Bellini, van Eyck, Seurat, Cezanne and Van Gogh in the museums.

Sighted people go on vacations and make sure they see the sights and my family took me to all of the required tourist hot spots. But with my failing eyesight, I’ve found that there is much more to the travel experience than what we see and that is to be savored as well. It’s true that what I saw was far from crystal clear and many times what I saw was mostly through descriptions but I used my other senses to enjoy my trip. My visual blurriness gave me the feeling of being part of an impressionist’s painting in Paris. And I thoroughly enjoyed listening to British accents and the French language that I’ve loved since high school. The feel of centuries-old cobblestone streets under my feet and the smells of the native cuisine along with the plethora of international flavors and languages feels like all of the senses having a party. And it always awes me to be in buildings or places that hold infinite stories of told and untold history. We don’t need our eyes at all to see the bustling ghosts of ancient times all around us.

I also appreciated that wherever we were, the understanding of the universal symbolism of the white cane was apparent and there was a general kindness and consideration communicated by all. In a way, even though my blindness can make for its share of inconvenience in life, it can also bring comfort to find that most people in this world are inherently kind. There may be a point in my future when I will not be able to see the photos taken on my trip but all of my senses will help me to hold treasured memories well beyond the sense of sight.

To learn more about Stella De Genova, click on the Statement tab on this blog site.

Maribel Steel is a writer, blogger, mother and singer who lives in Melbourne, Australia. As a person with Retinitis Pigmentosa, she believes her life is about learning to trust her other senses: to hear, to touch, to smell, to intuit, to love and to laugh.

Maribel was first diagnosed with RP at age fifteen and up until then, it seemed that she was only shortsighted and required nothing more than glasses. Her family had not suspected anything was radically wrong with her vision at that point, even though she could not see stars in the night sky, a symptom of RP.

The following is an excerpt of an interview with Maribel Steel by writer, Amy Bovaird. Full details are given at the end of this article

Can you describe a little bit about what the doctor said, how he broke the news?

As my parents took me to seventeen specialists to confirm the diagnosis that I was going blind, the news filtered into our lives over a period of time. My parents were devastated with the final diagnosis and I personally felt confused. On one hand, I was still the same person, yet on the other, I had been cast into a different mould by the specialists and was to accept the new label, ‘legally blind’ – even though in my own way of thinking, I was not blind at all.

Can you talk about some of your biggest challenges, and any that you’ve overcome?

I think challenges are a part of everyone’s life, big or small, whether you are blind or sighted. The real challenge is not so much the situation that can completely halt you in your tracks, but choosing a positive outlook to find an alternative route when it might be easier to give up. Sometimes life requires determined action and at other times, it requires a gentle grace to accept one’s limitations. I try to find humour in the frustrating moments but this often occurs after the event.

Being a vision-impaired mother when my four children were growing up was a major challenge. I often felt inadequate and held back tears of deep frustration not to be able to guide my children like sighted parents can: to point out letters on signs, to read bedtime stories from a book, to drive them to parties, to watch out for their safety in the park or at the beach, to tell them when it was safe to cross the road. Instead, it became a natural routine for my children to be their mummy’s eyes.

How does your community provide support for you?

Melbourne is a vibrant city which I am pleased to say has made a huge effort to include people of all disabilities by providing good access to public places. Also I am often pleasantly surprised by the kindness of strangers who go out of their way to help me locate the right building or the right door or the right tram. My magic wand (white cane) attracts generous people almost every time I venture out of our front door!

What advice would you give someone who has been newly diagnosed with RP?

“To anyone who may be diagnosed with RP, it is natural to expect that you will grieve for the loss of sight. Share this grief with a close friend or partner who can truly listen to what you are going through. You may initially feel your dreams and aspirations have all been taken from you and it will take time to adjust to a different way of being. The key in dealing with such a daunting future, regardless of age, is in accepting the limitations and reaching out to others so you can feel really supported on the challenging road ahead.

Be proactive in seeking out technology and other aids that can help you maintain a sense of independence – you might be surprised at the amount of helpful gadgets out there. Approach agencies that specialise in helping people with vision loss, because they are there to offer support and valuable information – my little motto is ‘the squeaky wheel gets the oil’ and believe me, it really does!

Finally, be kind to yourself because you will most probably be your hardest critic. Trust your ability to be resourceful, even triumphant, as you face the challenges to see your life in a different light. And as my son, at the ripe old age of four, once advised me, “Don’t ever give up.””